I wanted to say from the bottom of my heart to all of u that hav taken time to leave me messages with ideas, words of comfort & concern amoung other things Thank You & although Im still dealing w/the worst flair up Ive had in awhile its been helpful to hav all of you so again I thank you its ment so much & has been helping me thru cuz Im just too stobborn to go to a hospital lol. I hope to one day be able to help others like us that hav rsd/crps weather its helping to get them to the store a doc appt, finding a doc or startin a support group in my area & making this condition we all suffer with & fight with everyday more known than it is but til I can get ssi/dis n get a car its a dream I pray to become a reality oneday. Wishin u all pain free easy dayz ~HEIDI

I'll be hoping this flare subsides very soon, and you have some easier times ahead... Flares are horrible things and so exhausting to endure day after day. Take it easy on yourself and I hope today is a better day for you.

Bram

Hey Heidi, I know how you’re feeling. I think I would have gone completely out of my mind long ago had it not been for the support I receive from all the people on this forum. I too want to give back some day by raising awareness via a docu or PSA’s or something. I sure hope you’re able to get some relief soon!

Vrae - that's a beautiful idea. Now, if you only had a free moment!

OMG... right!? I want to do this SOOO BAD! I work on it in terms of research and collecting data, etc. You would probably either freak or identify with how much research I've done and the collection thereof. I must keep it anyway b/c my memory is all but gone. I even have a couple of working titles for it. I will make this happen, I just have no idea when yet.

Vrae- nope I wouldn't freak. I actually did clinical research for 20 years before this demon forced me to retire.

We are a bunch of educated lasses and lads then I wouldn't quite say I've read more pieces on CRPS than I've had hot dinners lol....but definitely more than I've eaten barbecues!

It's fascinating and relevant, and it is our protection against crappy medical care and wrong advice....I think that's part of the reason. We have to know as much as we can because nearly everyone we come across will know less about the disease we suffer from than we do...and because there is no agreed treatment protocol for CRPS, all those specialists out there are just guessing and experimenting...and of course some are better at it than others...

I'm in. When do we start?

Bram.

LOL, as soon as I get this LAST damn wedding edit off my plate and I have cleaned my house, or I have enough kids around to guide them through the cleaning of the house.

You're so right though Bram. It is our protection. I think I have scared a few docs along the way because I knew too much. Yes... they are "practicing" aren't they?

I too have done lots of research on what we fight thru everyday so I can not only have the knowledge but it helps when you have to explain to a doc and/or nurse who have never even heard of RSD/CRPS I lost count on how many times I've had to explain to docs & nurses. I don't mind the questions I get Id rather get more knowledge of rsd out there & Ive thought of so many things I'd love to do but cant right now. I have so many ideas one being a website deadicated to rsd/crps where people who have it or know someone with it can go & get info on different things like a local support group or if they need help with finding a doc or help getting to a doctor I have lots of ideas about how to help other people with this condition.
I think this site is awesome & of course all of you are too & having the support has been a godsend, but Id like to also have a in person support group I think it would be great meeting other people in my area who deal with the same thing I do ya know what I mean, maybe do like group socials out having drinks or dinner things like that it'd be fun. Anyways that's just some thoughts I had of what Id like to do got a bunch of ideas maybe we can all work together & do something

I think that's a great idea Heidi! Perhaps slowly but surely we'll be able to realize our aspirations.